Vitamin D - Your experiences

[squeepig]

I've read a zillion articles on Vitamin D, so I don't need links to more. What I'm looking for are your personal experiences with Vitamin D deficiency and Psoriasis or Psoriatic Arthritis.

Every 6 months, they have to put me on 50,000 units, once a week, for 6 weeks, just to get my levels back to normal. They've checked me for celiac disease, and those tests were normal, so they don't know why I'm not absorbing the Vitamin D. I have major enthesis (where the tendon inserts into the bone) pains and have psoriasis on the scalp, genitals, back, and legs.

[ouchyk]

Does the vit D help with your pain levels?

Karen

[squeepig]

Absolutely! Though the pains don't go away totally, I can actually walk without a cane when my levels are where they should be.

My mental status seems to be better at those times, too.

They've actually done studies that show fibromyalgia pains may actually be a Vitamin D deficiency, and that it may explain the bone/muscle pains in those who are homebound or in the nursing homes, as they don't get enough sun.

[DD]

I've read those. I am impressed by all the research that has come out about Vit D.

I upped my Vit D intake by 1800 IU (I was at 1200, now at 3000) and I think its helped. Its hard for me to narrow it down to one thing (since I started taking Borage oil and Colostrum at that same time), but since I upped it last week, I've had substantial clearing. I have UVB treatments 2-3 times a week as well (been doing that since Late Sept/Early Oct) and that helps too. I can say though that I was flaring big time right before I took it. I mean RED, ITCHY, FLAKY something horrible, and now some lesions have disappeared and others have lightened up. All that in less than 2 weeks.

[ouchyk]

Originally Posted by squeepig

Absolutely! Though the pains don't go away totally, I can actually walk without a cane when my levels are where they should be.

My mental status seems to be better at those times, too.

They've actually done studies that show fibromyalgia pains may actually be a Vitamin D deficiency.

Sorry I thought u were dx with PA.

What other things are they looking at with your issues if not celiacs? Who do you see for your vit D deficiency?


Karen

[squeepig]

Originally Posted by ouchyk

Sorry I thought u were dx with PA.

No doctor wants to call it that yet. I have nail pitting, I have Psoriasis, and I have tendon insertion pains (which can be a symptom of PA). I also have swelling in the distal finger joints, hips, knees, and ankles. I also have bursitis of both hip joints. But no doctor will call it PA until they "actually see damage." Grrrrrrrrrr.

What other things are they looking at with your issues if not celiacs? Who do you see for your vit D deficiency?

I see my primary care doc and a dermatologist. They want me to try a gluten-free diet, even though my celiac tests were normal.

.

[byrd52]

I'd also like to hear more on this topic. I'm at 1200 units, and like another person here I've also been going for UVB, so not sure about what is the primary reason for clearing. FYI UVB showed "nada" until about 25 sessions, then MAJOR improvement. I just started cutting back to 2X a week. Still OK but watching carefully, because my arms and legs were a mess for the preceding 10 months. Hang in there!

[ouchyk]

Originally Posted by squeepig

I see my primary care doc and a dermatologist. They want me to try a gluten-free diet, even though my celiac tests were normal.

.

Hummm...a friend of mine ( old neighbor ) see's a gastro for celiacs, she doesn't have p/pa, does have osteo though...I went on a GF diet, it's not too too bad there are a lot of foods that one can have. Might be an idea to try it for a few weeks-month and see if it's helpful.

best wishes,
Karen

[squeepig]

Why the heck was this moved to "Complementary and alternative"!?!?!?!?!?

What an insult.

According to the definition of this section: Alternative treatments are those which are either prescribed by a naturopathic or homeopathic doctor, an herbalist or Traditional Chinese Medicine or Ayurvedic practitioner--or are available over the counter at a pharmacy or health food store.

My FAMILY DOCTOR is giving me PRESCRIPTION Vitiamin D. NOT OVER THE COUNTER. NOT A NATUROPATHIC DOCTOR OR HOMEOPATHIC DOCTOR. I hereby thoroughly PROTEST the moving of this thread.

[DD]

What's wrong with the CAM Forum?

[squeepig]

Originally Posted by DD

What's wrong with the CAM Forum?

Nothing. I just don't think my post qualifies to be here and find it insulting when threads are moved willy nilly without explanation. A blind lock of a thread, or a blind move of a thread, is considered rude in forums. It only takes a second to send the original poster a PM or to place a quick note in the thread itself.

[GitOverIt]

I just sent a request to have you moved someplace else...maybe PA ? I don't think you belong here either! plus I don't think you would get the answers you want from CAM people...who are into the vitamin OTC D3.... not prescription!


p.s. I see you got moved to psoriasis forum....happy for you!

if you ever want our opinions on CAM come over and just ask....we might have some good ideas too!

[AnnieB]

Any chance you could get to see a rheumatologist? It sure does sound like you have PA. I was diagnosed without joint damage. I also had entheses inflammation as my major symptom. I did eventually get swollen fingers as well and some pitting. Sorry, I don't have much to say on the Vit D issue. (Glad the thread is where you want it. It probably got moved because there are so many discussions about vitamin D in Alternatives.)

[ouchyk]

Waiting for " joint damage " to occur in PA for dx is a lawsuit in the making, I cannot believe that a doctor said that to you.

You need to get another opinion.

Could very well be that you have fibro, no one here is dr although they would like to play one lol..

but I mean really!! second opinions are warrented in cases such as yours.

Karen

[teenPA18]

I take vitamin D supplements (cod liver oil) every day, its about 50% of the RDA (recommended daily allowance), and I think it has helped limit the PA but can't really benchmark it against anything.

Oh and considering PA gets worse in the winter, might not be due to the cold... but rather the lack of sunlight. Since the skin makes vitamin D from sunlight, a lack of sunlight means less vitamin D, and so worse P.

Then again it might be both!

[squeepig]

Originally Posted by AnnieB

Any chance you could get to see a rheumatologist? It sure does sound like you have PA. I was diagnosed without joint damage. I also had entheses inflammation as my major symptom. I did eventually get swollen fingers as well and some pitting. Sorry, I don't have much to say on the Vit D issue. (Glad the thread is where you want it. It probably got moved because there are so many discussions about vitamin D in Alternatives.)

I did see a rheumatologist but he closed his office and just left me hanging with nowhere to go. Now I have to find another one and there's none within a 2 hour drive so far.

Your symptoms were entheses and they took you seriously? You lucky duck!

My psoriasis just keeps getting worse and worse. I'll get one area under control and five more areas pop up. Using creams seems like such a losing battle.

I took my first 50,000 unit prescription of Vitamin D yesterday. I've got my fingers gently crossed.

I wonder if all my years living in Las Vegas got my body used to a certain amount of Vitamin D from all that sun exposure, and now that I'm living in rainy Washington state my body is confused. ??

[AnnieB]

I think the swollen fingers on top of everything else were a big clue. One thing good about living in a city (NYC) is that there are PLENTY of specialists!